Month: September 2016

I have written before about my Daugher Angel and have shared some of our lives. Thingscontinue to be complicated with my girl. She is now 12 but she is turning the corner towards 13, as she adorably tells me. In the past 2-3 years my family has been through a lot of change and we are trying to work towards what will be normal. When we get there it will be time for my son to head off to college I hope or whatever is going to be his future. My oldest daughter is 23 and lives on her own now.

Just about 3 years ago we were moving out of the house we had lived in for 8-9 years. We were moving to a totally new neighborhood to a better house and schools. No sooner did we move into that house than we found out my husband had Terminal Brain Cancer. We went from finding out about this disease and watching this disease eat him alive. I could actually write an entire series about my relationship with him. He was something else I used to call him Shenanigans as he was always involved in something. Building this, moving that, fixing this, breaking that. He was a good spirited man who had a lifetime filled with mind damaging emotional baggages. He fought through his life by outweighing the bad with the good. Somehow he stole my heart with his unique ways and truly fun to be around. During the time he was sick only parts of our lives could be altered. Angel still needed to go to dialysis and take care of her medical needs. She had Spinal surgery( the same one she just had 4 weeks ago today) the day after her Dad had a brain biopsy. There were 6 weeks where I would take Angel to Dialysis get her hooked up, drive home 45 minutes and get him and my oldest daughter who would take care of him and get him ready, off to radiation then we would usually all go home together, unless one of them needed to be admitted and then my oldest and I took turns driving back and forth taking care of everyone.

He passed on 9 months after diagnosis. Angel went to dialysis the next day. Some people think so what it is routine for her she has been doing this since she was 4 years old. Dialysis is not routine, you make it part of your routine. Any day, any treatment can go from relaxed and laughing to throwing up, or getting fever. Can go from feeling great to needing fluids, because you are crashing. It is a toll on the patient seeing their blood go in and out of them for 3-4 hours, Angel was on 4. It is also difficult on the family members who go with them. They have to hope for good days, hope there is no problems with the machines, or the water, or your access. Then your 4-5 hour day turns much longer. Angel went to dialysis the next day. We came in the afternoon instead of our normal morning the nurses said it will be quieter and be better for her to not be forced to deal with others so quickly. Her dialysis center is her comfort zone. She has grown up there and has been loved by the nurses, taught by the nurses, teased by the nurses and nurtured by them. They have been the same team for a long time and each brings different personality and experience to the unit. It makes for good outcomes during treatments, they notice something is off sometimes before the patient themselves. They also know the I have a tummy ache please play with me to the real let’s call the doctor pains. It is a comfort zone that only a person who experiences should know when they are among good people.

So back to Angel 5 months ago we were told that Angel has the BK virus. This is a virus a lot of people carry. It is likely it came with her transplanted kidney. She has not been able to beat this virus. They have taken her off this medication, started her on that and so on. It came down to Infusions every two weeks. During that time she caught many urinary infections. She was running low grade fevers on and off and something was not right. She was admitted many times. Each time the stay was about 10 days. She had the first of her spinal surgeries. Although there was complication during surgery she seems to be better from that each day. 2 weeks ago she was admitted to the hospital with terrible stomach pains, low fevers, throwing up on and off, no appetite and non consolable kind of pain. Once we got to the day hospital , the pharmacist who knows us for a very long time said, called the doctor immediately when he heard her cries. He said Dr. P, this is not Angel she does not cry like this. It took 10 days or so to figure out what is truly wrong with her, so much tests. So many things ruled out. We finally got a diagnosis. No wonder she is screaming in pain her native kidney is filled with cysts and totally infected. So now we have a source but what do we do about it. She is still with fevers and terrible pain so how do we proceed. Infectious disease is helping with antibiotics and surgery has weighed in on the we don’t want to take it out. They have already done the following surgeries on that area of her body:

Colostomy

2 Reconstructive surgeries

Colostomy reversal

Kidney Transplant

Kidney transplant removed

Kidney transplant and Urostomy placed.

She has had many other surgeries but they were on the other side or her back or other body parts.

So now for them to go back in and take out that infected kidney is going to be very hard on Angel and very hard on the surgeon. They will do what they have to for Angel but what does it mean for her health. On Wednesday we will re-evaluate blood tests, inflammatory markers and something else and then a plan will be formed from there.

My daughter is one tough kid and she is no crybaby. They wake her up for blood work and she just fusses about the light coming on. When it is time for meds the most she will do is grunt and sit up. When she is feeling good we go for walks, if she is hungry which is not often I get her whatever I can that she likes. If she wants to play or do arts and crafts we do it but a very good part of the time she sleeps. She likes when the family comes to visit it makes her feel like she has people pulling for her.

She has been really surprised this admission with all the terrible pain and all the crap she has gone through, she has had some good come with it. She won a school raffle and won an IPAD Mini with a case, headphones and an Itunes card. That was so awesome for her she is loving it. Also a friend of ours did a fundraiser with the company she works for and they get her a new outfit and a donation that will be coming. Not only was it something fun to be part of it made her feel loved. People that know her people that don’t were sending her messages.

So hopefully wednesday we will get a good plan. It breaks my heart listening to her cry in pain all night. Some nurses are wonderful and know to have the meds ready that she calls out every so many hours and others want to go through the process when she is already screaming in pain. I know some people will follow all rules but when in Peds, the rule are meant to be broken when it comes to pain management and comfort.

Today was the first day that she attended Teleclass in over 2 weeks and she was hoping her teacher would come down and see her today also, although it is not a scheduled day.She gave me the greenlight to come home, grocery shop for my son and shower and come back. I am cheating taking a little me time to write. I am glad I can type quick 🙂 .